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Thursday, September 1, 2011

To Melatonin or Not To Melatonin.

From the moment Harri arrived he struggled with sleep. I recall the nurses insisting they take him from me about 12 hours after his birth so I could snatch a few hours rest. Something I had been unable to do with him in my care as he would only nap while being held and rocked. I awoke an hour after they removed him, anxious to know where my newborn was, I traipsed down the hospital hallway where I easily located him by following the sounds of his cries. He had been bathed, dressed, wrapped and left to cry himself to sleep. Something he was simply incapable of. Without movement he could not settle. If left in a cot he would cry. And cry. And cry. Becoming more wound up as time went on rather than wearing himself out like most babies.

After 24 hours I checked out of the hospital as I felt guilty for Harri continually disturbing the other mothers and babies, and figured at least at home my husband would be able to take over Harri's care so I could get some sleep. And from that time on sleep became a rare luxury for all three of us. Both day and night became a blurred focus on getting this kid to settle. Bassinets that bounced, mechanical swings, slings, exercise balls, laps around the block, and occasionally leaving him to cry because we had reached the end of our rope and it was safer for Harri to cry alone than be handled by frustrated and sleep deprived parents.

When he reached 8 months and I was sure he had the cognitive capacity to understand a routine process I sleep trained him for day sleeps. After three days he could be put down for a midday nap, which he continues to have to this day. He was ready, and so was I. Then we used a similar method for night sleep. Which proved far more painful to implement.

'Experts' recommend children sleep 10-12 hours a night. I doubt Harri would have ever slept that long. He goes to bed easily at 7pm each night, but at some stage usually between 1am and 3am, he will awake then toss and turn for the next hour or so. I know this because during my own insomniac episodes I hear him through the baby monitor. He wakes periodically at other times also.

It seems to me neurological rather than habitual as it is a pattern of a life time, this restlessness. How a two year old can lie in bed for such extended periods of time with no attention or stimuli and remain awake can only be explained by some unusual mental activity as far as I can tell. And it has led me to wonder if perhaps we should consider Melatonin to assist him to stay asleep.

In talking to other parents of children on the spectrum, it seems quite a lot of our kids are using it, and the results have been "life changing" to quote one mum. I am aware this is not always the case however, and so I am facing this decision, like most others we contemplate, with no certainty and lots of apprehension. I would probably not even consider it if I thought lack of sleep was not impacting him during the day, but I do see some behaviours I suspect are the result of being tired. The thing is how do I know if I don't try whether he could be functioning and learning at a higher level than currently? Yet instinctively the Melatonin path feels premature, although I cannot articulate why. I just know that a lot of my decisions in terms of how I have managed Harri over the last (almost) three years have been based on hunches, and so far it's worked. So do I continue to follow my gut, or is it possible I am simply reacting to the idea of my child being medicated?

Another quandary to negotiate. Another issue to perpetuate my own sleeplessness.

16 comments:

Another tough decision, huh? We gave A. melatonin for awhile, and it worked great for getting him to sleep. Not so effective for keeping him asleep, unfortunately- he still woke up around 3 or so for phases of about two weeks at a time. When this happened, he would be awake for a couple of hours and then exhausted and miserable the next day. So, we recently decided to stop melatonin since he was capable of falling asleep alone in the first place. Not to scare you off, we might use it again sometime if needed and everyone seems to have different experiences with this. It seems to be fairly safe, so I would say give it a try if you're interested. Good luck!

I have tried to post few times from google account but for some reason can't when i sign in so i'll have to be anonymous! Kats from Ireland here. Melatonin is a natural hormone so if your son is lacking in it i'd say defo give it a try and see if he gets more sleeppp. My little one suffered so badly and it definitely stopped her learning. Not so bad now as she is older and does not need as much sleep. Melatonin for us though did not work, put her asleep (mostly our issue) but then she woke middle night and never went back asleep. tried one month then had to give up!! She sleeps bit better now, put her to bed bit later, that help. I have a two yr old as well who sleeps 12 hours everynight so i thinnk it is nuerological - loving your blog still : ) find it very helpfulKats

Christy, same here with Harri, he falls asleep OK its the staying asleep thats the problem. Apparently there is a slow release Melatonin for that issue. And yes you are right about it being safe so I probably should not have any concerns about trying it. Thanks.

Hi Kats, google must be playing up not to allow you to add your name, Ive had this happen before. Yes I am certain it's not a habitual thing. I know there seems to be a lot of 'professionals' who think we are setting up these bad habits in our kids but I am certain that's not the case with Harri. Thanks for sharing your experience it's good to know things can settle with age, and for your kind words about the blog. It's great to connect with other ASD parents.

My daughter and I, both on the spectrum, take Melatonin. It is a miracle to have it available, since other neurotransmitters can't be taken that way. We take the slow release version and are happy to pay whatever it costs, which is a lot, because it is worth every penny.

I say go with your gut but keep gathering information and be open to trying it if you get enough positive info to feel okay about it.

My son and husband take it and feel that it helps them greatly. I do not take it as I don't like how it makes me feel when I am falling asleep. I am not aware of any residual effects if it is taken at bedtime.

I don't know if I am the mom you were quoting, but I will say that we have tried many other supplements that did not have any noticeable effect, so the melatonin stands out for us as something that actually makes a measurable improvement in our lives.

My son also now takes a medication, and it took me over a year of discussions with the psychiatrist and various other professionals to agree to even a 2 week trial of it. I feel good about what we are doing now, but I don't blame myself for waiting, and I don't expect either the melatonin or the meds to fix my son, just to make things a bit easier for him.

It's a really hard balance to find, and it changes constantly as they grow and change, so that's why I think we moms should never ignore our gut feelings.

Not a one. It isn't like Valium, it is a hormone. It wears off really quickly, hence the need for a slow release version for those who don't stay asleep. Actually, to be honest, it doesn't make you "drowsy" as such, just able to go to sleep. Hope that makes sense.

Trish thanks so much for that. The mum I quoted has a child at the same centre as Harri, and made the comment just this week when I spoke to her during a parent info forum on sleeping. Seems like plenty of people are using it with great results.

I was reluctant to begin melatonin with my kids because of the medication issue. I tried lavendar oil first, with some positive results. A few drops on a pillow or even in the room helps ease sleep.

Eventually we did try melatonin. At first, the results were good; then, for a while, it didn't work and we discontinued. After a few bad months, I tried melatonin again and worked harder at providing a very short routine (just a few ritual phrases) and that's been working very well.

It's not an easy decision to make and I would never suggest taking it lightly, but, on the other hand, sleep deprivation (for you or Harri) isn't something to take lightly either.

Try rituals--a variety of rituals. Try warm baths, warm milk, and/or lavendar. Try weighted blankets or naturally heavy blankets. But, from the research I've done and our own experiences, the side-effects of melatonin (which is natural to the body) are minimal, so if it's necessary, don't let yourself stress too much over trying it.

Thanks Stephanie, I agree about rituals. WE have had one for a long time that works well. He is one of those kds who seems to go off to sleep OK, but wakes several times, and doesnt find it easy to turn over and slide back into sleep. The slow release melatonin I have heard is to address this. I'm still ambivalent, but at least I know I have it there as a possibility if things get worse.

If a bedtime ritual works, then you might want to try a getting-back-to-sleep ritual. Make it self-sufficient so once he learns it he can do it on his own without your help, but a few nights (for you) of too little sleep to teach it to him will be required. We did that with Willy for a while and it helped him from getting all the way awake any time he woke up.

i wonder how many people really understand that ingesting a "hormone" is useless and is most likely a placebo effect. Since your body makes it naturally, it it pointless since it can not pass the blood brain barrier. Thanks for wasting your money though.

Anon, it sounds like you need to look at the actual scientific research into melatonin use for ASD. I recommend having a look at this summary document, starting at page 10, before you go around needlessly insulting any other parents: www.asdguideline.com/content/documents/0000/0012/LGG_supplementary_paper_on_3_pharmacotherapies_FINAL.pdf